April 14, 2014 | 2:05 PM | Ilyse Levine-Kanji

Autism: Awareness Helps, But What We Really Need Is Knowledge

The author’s 15-year-old son, Sam, after an orchestra concert. (Courtesy)

By Ilyse Levine-KanjiGuest contributor

April is autism awareness month. Awareness is great. But what really frustrates me and other parents of children with autism isn’t a lack of awareness but rather how little is actually known about the disorder.

For instance, there is no explanation about why the number of autistic children is exploding. Less than a month ago, the Centers for Disease Control released updated data about the public health epidemic of autism. The CDC found that for children born in 2002, the prevalence of autism is 1 in 68, and 1 in 42 boys. This new prevalence finding is roughly 30% higher than just six years ago and roughly 120% higher than the CDC’s findings in 2002 (1 in 150).

I’m incredulous that people still argue that the increase in the prevalence of autism is only due to better diagnosis. Do we really believe that doctors and teachers 20 years ago simply didn’t notice the devastating symptoms presented by children affected by autism?

Equally frustrating is the lack of knowledge about the capabilities and inner lives of people with autism. When my son Sam was diagnosed at 26 months in 2000, we were told that a primary hallmark of autism is social disinterest and the desire to be alone. Now that Sam is 15, we realize that couldn’t be further from the truth.

Within the first minute of meeting Sam, you know that he is different. He likes to walk up to people he doesn’t know and rapidly blurt out: “What-is-your-name-and-when-is-your-birthday?” He can say this in an unexpectedly loud voice, with his eyes averted and his back or side facing the person he’s addressing, and maybe standing too close to — or too far away from — his intended “conversation partner.” Once the person answers, Sam often simply moves away, without acknowledging the response or following up in any way, leaving the person confused about the unusual interaction.

Connection

While Sam’s social interactions are often quirky and unexpected, Sam has a deep desire to connect with others. He is always willing to go to the grocery store or run errands with me, primarily because he’s excited to see who we will run into. People joke that Sam acts like “the mayor,” greeting everyone he sees by name and with an extremely enthusiastic fist bump. (Again, we were told that people with autism have trouble recognizing others, which also hasn’t been true for Sam.)

What is accurate is that Sam has tremendous difficulty communicating. He speaks in full sentences, but it is often a struggle for him to communicate his thoughts. One way that Sam compensates for this difficulty is that he painstakingly plans out what he is going to say to someone before he sees him or her.

Sam has many rehearsed scripts in his head that he pulls out depending on the person. One of his favorites is telling jokes that might be specific to a certain profession or situation. For instance, I think each of our town’s police officers now knows the answer to Sam’s joke “Why did the police officer go to the baseball game?” (Because someone was stealing second base.) Sam’s astounding memory helps him remember who has already heard each specific joke or story so that he doesn’t repeat himself.

I know that Sam isn’t alone in craving social opportunities despite his autism diagnosis. One of his friends likes to arrive early at school and hold the front door open, even during the freezing winter – just to be able to greet his fellow classmates and teachers. Sam’s high school has an active chapter of Best Buddies, where students with and without special needs “hang out” during structured activities twice a month. Sam is thrilled to be invited to his peers’ houses, and it’s heartwarming to see how the typically developing teenagers accept Sam for the sweet, happy, idiosyncratic person that he is.

Inner life

Not only were the experts mistaken about whether autistic people are interested in building social connections, none of the doctors we saw over the years ever suggested that Sam might have a rich inner life. However, now that Sam is older, my husband and I realize that Sam engages in a level of critical thinking and empathy that he’s previously been unable to express.

Sam’s special education English class read “The Glory Field” by Walter Dean Myers this year. Sam was devastated to learn about our country’s history of slavery. He sought reassurance that our family would never be separated and sold to the highest bidder. I struggled to answer his questions about how slavery and discrimination could happen to other human beings just because of the color of their skin.

As painful as these conversations were, they were also thrilling because I never imagined we could have them when Sam was younger — when he needed an adult at his side at all times to ensure he didn’t run into the street or turn on the stove or rip things off the walls, and required intense hours of individualized therapy to teach him to put words together and learn the basic play, self-care and social skills most children simply “know” without being taught.

More than anything I’ve come to view Sam’s autism diagnosis as an inability to communicate. I know there is so much more going on inside his head than his outward appearance belies and I can’t wait for my beloved son to teach me more about himself as his communication abilities (hopefully) continue to increase. I look forward to a time when we are not only “aware” of autism, but actually understand it.

Ilyse Levine-Kanji lives in Westborough, Mass. with her husband and two sons and serves on the Westborough School Committee. Her Website is here.

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Massachusetts is the leading laboratory for health care reform in the nation, and a hub of medical innovation. From the lab to your doctor’s office, from the broad political stage to the numbers on your scale, we’d like CommonHealth to be your go-to source for news, conversation and smart analysis. Your hosts are Carey Goldberg, former Boston bureau chief of The New York Times, and Rachel Zimmerman, former health and medicine reporter for The Wall Street Journal.

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